People with obesity are often disrespected. Can 'bill of rights' remedy a broken system?

For decades, people with obesity have dreaded interacting with their health care providers.

Take Patty Nece.

When she was in third grade, the school nurse wheeled in a scale and lined up the kids. After weighing the straight-A student, who loved to swim, skate, bike and do gymnastics, the nurse turned to her and announced in front of her classmates: "You're fat and you need to lose weight."

Nece, whose parents and grandparents all carried extra weight, got larger with age.

A successful career as an attorney with the Department of Labor provided plenty of evidence that Nece had self-control, but she blamed herself for every pound gained.

Finally, nearing retirement, she saw a doctor who helped her lose 70 pounds and feel healthier than she had in years. But persistent hip pain sent her to an orthopedist.

The specialist wouldn't listen to her long enough for Nece to share that she has lost weight. "You need to lose weight," he insisted. Then, when he saw her tears, the doctor blamed it on the pain from her excess weight.

"I didn't have the courage to say 'I'm crying because you're being such a jerk,'" Nece, of Alexandria, Virginia, told USA TODAY in a video call. A different doctor later found her hip pain was caused by scoliosis, an inherited curvature of the spine that had nothing to do with her weight.

The American medical system expects patients like Nece to simply swallow their pride and put up with such indignities, blaming themselves for some assumed misstep rather than their care providers for unvarnished insults. Often they simply skipped seeking medical care at all.

On Wednesday, a group of more than 35 advocacy, aging and health organizations seeking to change the way medical professionals view such patients issued an Obesity Bill of Rights. The bill, which resulted from years of effort, including diverse town hall events across the country, demands better treatment for people who weigh enough to meet the clinical definition for obesity.

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The eight "rights" outlined in the declaration include:

• The right to accurate, clear, trusted and accessible information.

• The right to respect.

• The right to accessible obesity treatment in settings that allow for privacy, using equipment and scans that fit patients' bodies.

Nece said she hopes the bill of rights will help raise medical providers' consciousness about the stigma people with obesity face in health care, and empower them to recognize ‒ as she was unable to in that moment with the orthopedist ‒ that they are worthy of "unbiased, educated, and compassionate care in all circumstances and to demand that care."

Patient rights should go beyond getting medications

Tigress Osborn agrees patients like her should be granted more respect and have access to appropriately sized medical equipment, including blood pressure cuffs, waiting room chairs, MRI machines and exam tables that accommodate larger people.

But Osborn, board chair of the National Association to Advance Fat Acceptance, which put forward its own Bill of Rights nearly a decade ago, is suspicious of the groups involved in the new bill of rights and the framing of their approach.

"All of this feels like astroturfing, because it is," she said, referring to efforts to hide the true sponsors of a message by suggesting it originates from the grassroots instead of corporate interests.

Many of the organizations supporting the bill are backed by drug companies that make weight loss medications or are in the weight loss business themselves, Osborn noted.

All of the language in the bill is around caring for someone's obesity, not the person, she said. One right, for instance, calls for "older adults to receive quality obesity care that comprises a respectful, comprehensive care approach consistent with their personalized medical needs." But, Osborn asked, what about their health needs that aren't related to obesity?

"If you care about the health of fat people, you have to care about all of the health of fat people, not just the fat," she said.

The real goal of the bill, she suspects, is to be more welcoming to patients who are eligible for newer-generation weight loss medications and, ultimately, to encourage Medicare and private insurers to cover the cost of the medications, including Wegovy and Mounjaro, whose list prices top $1,000 a month.

More than 40% of Americans meet the definition for having obesity, but only a fraction qualify for health coverage that includes these medications.

"It doesn't feel like it's a bill of rights for obese patients," Osborn said. "It feels like it's a bill of rights for treatments."

The first time there's truly effective weight loss treatment

Advocates say the measure is more than that. It's about access, they say.

It's important for people to get the treatment they need, said Sally Greenberg, executive director of the National Consumers League, which is helping to lead the Bill of Rights effort.

Only about 10% of people with obesity get seen by a medical professional, and only about 2% get treatment, because of the stigma and misunderstandings about obesity, she said. "We want to change that narrative."

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For decades, heath care providers have framed obesity the result of a lack of willpower: If people exercised more and ate less, they would lose weight, the thinking goes.

But research has shown that it's extremely difficult for the vast majority of people to lose and keep off weight through diet and exercise. Losing and regaining weight, as many people do, is worse for people's health than simply carrying extra pounds, research suggests.

Millions blame themselves and suffer discomfort, embarrassment and health problems because they can't lose weight.

Osborn, from the National Association to Advance Fat Acceptance, says a lot of the hardship would disappear if society and health care providers did away with the stigma. Weight would be less unhealthy if society and some of the organizations involved in the Obesity Bill of Rights didn't make large people feel bad about their bodies, she said.

Obesity meds' staying power

Newer weight loss medication can help people lose unprecedented amounts of weight, though it's still unclear how long they can keep that weight off and whether they need to keep taking the medicine indefinitely to keep the weight from coming back.

Other available weight loss treatments include intensive behavioral therapy, which is covered by insurance only when offered in a doctor’s office, as well as medical nutrition therapy, diet and lifestyle approaches, including meal replacement, and bariatric surgery.

Accessing these treatments is vital, but patients won't always seek them if they're shamed by their doctors, some advocates say.

"It's really criminal that individuals that are navigating these conditions that we have remedies to address feel invisible and aren't getting the care that they need," said Ramsey Alwin, president and CEO of the National Council on Aging, which is also leading the Bill of Rights effort.

Alwin believes it's a vital first step toward making health care accessible to all.

"We hope it sparks a national conversation on how to create a more equitable vision for health care," Alwin said

Other groups involved in the effort include the National Black Nurses Association, the National Hispanic Health Foundation, the Obesity Medicine Society, WeightWatchers and the Obesity Action Council, of which Nece was a former chair.

In November, Nece tore open her leg in an accident. At the wound care center where she was treated, she was referred to a rheumatologist out of concern that she might have an autoimmune disease. In the middle of the conversation, out of nowhere, the doctor asked Nece if she had considered weight loss surgery.

Nece asked the doctor if she was familiar with the newer, less intrusive treatments, such as weight loss medications known as GLP-1s. No, the doctor wasn't.

Ideally, Nece said, the Obesity Bill of Rights will raise awareness among doctors like the rheumatologist about how to better approach patients with obesity.

"Maybe things like this will wake up people who deal with patients who are large-bodied or have obesity," she said. "We can hope."

This article originally appeared on USA TODAY: Some say it's time for an 'Obesity Bill of Rights.' Here's why.